Specialized palliative care services are associated with improved short- and long-term caregiver outcomes

Abstract

Goals of work: The goal of this study was to evaluate, at a population level, the association between specialized palliative care services (SPCS) and short- and long-term caregiver outcomes.

Patients and methods: The Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related data from a rigorously derived, representative sample of 4,400 households. This study included piloted questions in the 2001, 2002, and 2003 Health Omnibus Survey on the impact of SPCS. Sample size was 9,088 individuals. "Unmet needs," a short-term outcome relevant to the caregiving period during a life-limiting illness, were tallied. "Moving on," a long-term caregiver-defined outcome reflecting the caregiver's adaptation and return to a new equilibrium after the death, was assessed with and without SPCS.

Results: Thirty-seven percent (3,341) indicated that someone close to them had died of a terminal illness in the preceding 5 years, of whom 949 (29%) reported that they provided care. SPCS were involved in caring for 60% of deceased patients. Day-to-day caregivers indicated fewer unmet needs when SPCS were involved (p = 0.0028). More caregivers were able to "move on" with their lives when SPCS were involved than when SPCS were not involved (86 vs 77%, p = 0.0016); this effect was greatest in the first 2 years after the loved one's death.

Conclusion: At a population level, SPCS were associated with meaningful improvements in short-term ("unmet needs") and long-term ("moving on") caregiver-defined outcomes.

Fig. 1

Conceptual model of the relationship between caregiving, ‘moving on’, specialized palliative care services (SPCS), and unmet needs

Fig. 2

All palliative care survey questions embedded in the South Australian Health Omnibus Survey, 2001–2003

Fig. 3

Bereaved caregivers’ definitions of ‘moving on’ (n = 24)

Fig. 4

Relationship between the number of categories of additional supports needed during the period of the illness through death, level of care provided, and specialized palliative care service (SPCS) involvement (p = 0.0014 for the interaction of level of care and SPCS). Data from 2003 survey (total of 994 respondents and 314 caregiver respondents). Linear regression model with Tukey corrections (PROC GLM); numbers are least squares means of the number of extra support needs identified by respondents. Vertical bars represent 95% confidence intervals

Fig. 5

Relationship between time and the ability to “move on” with life for those with and without involvement from a specialized palliative-care service (SPCS). Chi-square tests were used at each timepoint (likelihood of moving on by use of SPCS)